Wednesday, November 30, 2011

An Autism Taboo That Needs To Be Broken

Break The Autism Taboo

Taboos, of autism and parenting at Ramblings of a Stone Age Queen is one of the best commentaries I have read about the realities of parenting an autistic child who suffers from meltdowns that can result in aggression towards herself and the parent who cares for her. This is not a fluffy opinion piece by a high functioning autism researcher sitting in his lab. This is a concerned parent talking honestly about the harsh realities, the thoughts that spring into her mind in the midst of being attacked by the child she loves. This is the story of mandyque; one parent who has stood up and said "this is happening to me".

I encourage you to visit mandyque's blog Ramblings of a Stone Age Queen where the commentary is posted. If you are a parent of a child with autism leave a message of support. If you feel up to it tell your story. Help mandyque break a taboo that needs to be broken.

Following is the entire comment. I was going to post an excerpt but this is such an honest, courageous and compelling story that I am reprinting it in its entirety. It is a story that should be known:

"I have had a particularly difficult weekend with my autistic daughter, and it occurred to me that there are some things that only other parents of children with autism understand properly. But even then, there are things which are left unsaid, because we are too scared that we will end up facing criticism, or worse, social services involvement. But if we aren't honest about what is going on, we carry on suffering in silence, convinced that we are the worst parents and that we will be hated and reviled if we dared to speak of our deepest fears.

On Saturday night, daughter had a major meltdown. She became so upset and confused that she attacked me, lunging forward and clawing at me, and she spent over and hour screaming blue murder. I have no idea what the neighbours must have thought, she sounded like she was being brutally tortured. The fact is, this hideous scenario occurred because she wouldn't go in the bath, then when I said it was time for bed, she wanted to go in the bath, but it was too late. Perhaps I should have given in and bathed her anyway, but it's all part of her needing to learn flexibility, that she can't always have her way, and besides, I was exhausted already and needed to go to bed myself.

Finally, I was able to get her upstairs, but she lunged for me again, trying to push me out of the way, clawing at my arms and chest and screaming. This is where the shameful part really kicks in. In any other situation, if someone attacked you, the fight or flight reflex kicks in, but of course you can't fight back when your disabled child attacks you, because that is a child protection issue. Nobody considers that it's also a carer protection issue, and no carer wants to admit that they had the urge to fight back. I didn't want to harm her, and I didn't, but the urge was there. The urges included wanting to tear at her hair, putting my hands on her neck, slapping and punching her. In any other situation that would be accepted as a normal reaction, but when it's your child, it's met with shock and concern that you are an abuser. I repeat again that I did not act on these impulses, I did not harm her, but to be put in that situation is an unbearably hard thing for a parent to cope with.

Eventually I managed to get her into the bathroom, where she sat on the toilet, refusing to move for over half an hour, while I got out and waited on the landing. When she is so wound up, she needs a lot of time to calm down, without stimulation and attention, so away from the TV and computer for a start! I sat on the floor, shellshocked and shattered by this latest episode and hoping that she wouldn't come and attack me again. She screamed and screamed for a while until exhaustion made it subside, but she kept winding herself up and having a little scream, which I had to ignore, while making sure that she can't come downstairs again. Finally she calmed down enough to realise that she had to go to bed, and bizarrely, once she had calmed down and come to terms with the situation, she just got up and went, as quick as that. She just stood up and walked into her bedroom, where we had a hug and a goodnight kiss and she went to bed. And that was the end of that, for her at least, the whole situation, over and done with. In the meantime, I'm ready to crack up, I don't know whether to cry or scream, I'm completely dazed by the whole event.

But how do you deal with this sort of situation? I know how to calm her down, I know that putting space between us works, I know that she needs a low stimulation environment and time to process information, but what do you do when your child attacks you? Especially as they get older and stronger, you can't pick a 15 year old up and put them in time out like you can with a tantrumming toddler, you can't lock them in somewhere because that is imprisonment, and you certainly can't hit them back. Manual handling courses are available for teachers and professional carers, but parents are not allowed to do these courses for insurance reasons. There is no protection for the carer at home. Parents of teens and young adults are actually told to call the police, but what is the point of that? Criminalising a disabled young person who isn't being violent because they are bad, but because they are confused and upset? Terrifying them with a visit from a policeman, who we all know is there to catch bad people and stop them doing bad things by putting them in jail? There's little point in calling on help from social services, you end up being made to feel that you are a failure as a parent instead of being supported.

The only people who truly understand are other parents who suffer the same way, but none of us get the help to deal with situations like this. A friend of mine today asked if I had a panic button, similar to the ones that elderly people use to get help, but there is no such support that I know of. What is the answer? I'm damned if I know, but taboos are there to be broken, and if one person can stand up and say 'this is happening to me', maybe others won't feel quite so alone."

this is brilliant and I will do a post about it too, to support. Because we live in an apartment building and when Khaled is screaming (because he wants to play with bandages) it does sound like we are killing him, but as "behaviorist" parents we are supposed to pretend nothing is going on, because if you even go and try to talk/reason or comfort it gets worse and tantrum prolongs. I should be posting more of these on my blog, but I too fear sounding like a whiner, or a bad parent who is ungrateful and so on, which we are not.

I love her honesty. I am truly tired of the sugar coating of autism. So many who "call themselves autistic" raving about how wonderful it is and parents of severely autistic children lying through their teeth about the lives they honestly lead need to just STFU.

Mandyque is a fantastic person. I have known her online for years and she has offered so much support, advice and understanding towards me and my own circumstances. I asked her if she minded if I passed her blog post onto you.

Thank you everyone, I am the author of this blog post. I was in such a mess after my daughter's meltdown, and I really, really needed to offload the frustration and worry that these meltdowns cause. I know that a number of my friends who have children similar to mine are suffering the same way, some much, much more severely. But how can we ever begin to start dealing with these situations if nobody speaks out? The fear is great, the violence is frightening, and carers need support, just like the support that is available for victims of domestic abuse, for instance. If it wasn't for the mitigation of autism, it would indeed be classed as domestic abuse, but the concerns I have raised in my post show that a breakthrough needs to be made so that appropriate support can be made available.

I deal with a 20 something year old autistic woman who is extremely aggressive and self injurious.. in other words I know exactly how this mother may feel.

I have to admit I've got to the point I've pushed back, swung back at her, kicked at her to try to survive or at a sheer fact we've lost it too, nothing to be proud about either! Around her is a matter of survival it really is. You never hear about these type of stories on the news, never!!! Whats worse though even when you try to survive, she seems to get angrier, stronger and since she doesn't feel pain, and of course the upside to autism according to some individuals with autism, perseverance - she won't give up!!

The reality of autism isn't always talked about on many forums, or on television for that matter and its sad too! I see autism every day and night, sometimes you hear words, sometimes you just hear noises, sometimes just screams. Sometimes you have to stop them from banging their head or any other body part, biting themselves. Sometimes you just watch as they manically run through the house constantly stimming for no apparent reason. Sometimes you witness a meltdown. Sometimes you have to fight the meltdown yourself as it turns into a MMA fight match that your never ever prepared for that includes biting and scratching! Sometimes you get a hug, maybe some smiles, maybe some laughter, other times its just pure angry for no reason and you just sit there imagining what its like to be so angry all the time how exhausting it might be but then you notice they rarely sleep too. Their is never a moment where your not on the edge that something may or may not happen, and doesn't matter the treatments, diets, supplements, therapys, tests, sometimes you can't fix it!

That type of autism should be told more, because its not just a story to some, its a reality to many!

I admire your blog Harold and many others like that woman's whos stories are so similiar its scary!

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

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Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.